Still looking good

All scans have been completed and compared and it all looks good.
I have a thyroid the glows with isotope uptake and the doctor is having a few
radiologist look at it but what ever they decide it will be manageable.
Had a brain scan the other week it was normal too, some people
would find that amazing. So it's back to work I go
and have started a few days a week. Actually I did miss it a wee bit.
Greatest news is that Mickey got his new kidney and it works well
thanks to his donor Mike and the support from his family.
I will get rescanned in a few months and will update then.
Nothing much more I can say except thank you for all your
love and support in helping me get over this bump in the road.

News Flash !!!!!!!

Hot off Fax machine....The results of the PET and CT scans...
The bottom line reads "there is no evidence of active neoplastic disease at this time".
I just reread the report and realize that the previous studies were not available for comparison
when the DR. was reading the current scan. The previous scans will be sent over to the Dr. and
he will do a comparison when he gets them and amend his report if needed.
The thyroid has an uncertain presentation and will be followed for possible adjustment in
thyroid medication.
So ....I still keep my fingers crossed....I think I see the light at the end of the tunnel

Getting some blood today...maybe.....

It was amazing how fast my counts dropped yesterday or how I felt them drop. Friday my HCT was 31.5 and PLTs were 219 before getting the last dose of chemo and Tuesday I had dropped to HCT23.6 and PLTs 76. Monday I had an impromptu Margarita Party...went well and felt good throughout a little tired but that's the norm lately. Yesterday Tuesday AM got up sun was shinning so I worked out in the back yard and took a short walk top see what was happening on the other side of the back fence. They are removing the cottonwoods in order to put up a new fence. I have spent many a night wondering how I could poison them and make them go away. BY 11AM I knew something was changing. I gulped down a second 5 Hour Energy...something I never do and still felt like someone had turned on the tap and all my energy was running out of my body.
I was getting short of breath just going up stairs to the bathroom. I have found that when feeling like this it's best to take a Xanax ...it will keep you from crying or make you stop if started.
I had to call my son Scott to drive me to my appt. because I couldn't drive...I had cancelled his
offer earlier that morning because I felt so good.
So we go to the appt and counts have indeed dropped so I get scheduled for a transfusion for this morning Wednesday 9AM at the Prov Infusion Center at 9AM. Great .....Wonderful....
OOOOP's what about the insurance coverage..... Aetna's hours are 8-5 and it's 6pm now.
No help on their website because they don't have any "infusion" places listed in their list of providers. So I got up at 5:45 this morning to start calling Aetna to find out what to do.
They record me and I record them .....After an hour and 15 minutes on the phone ...5 phone calls to different representatives it all boiled down to I have to provide Aetna with Prov Infusion Center Tax ID before they can do anything even though they know they don't have a provider in the state and if I don't they will penalize my by charging out of network prices.
So...I'm waiting for Prov Administration to arrive to see if one of those kind people will give me the tax ID to Prov Infusion Center so I can get my transfusion. To be continued...........

UPDATE....
After spending over an hour on the phone ( started at 7am) with Aetna and being told by 3 Aetna representatives that there were no infusion clinics in town ...actually there was..the one I was going to. This info was found by the clinic 10 minutes after I arrived. Why Aetna wouldn't tell me this I don't know. Good thing I took notes while talking to Aetna and have all their names. I will be writing a letter to the insurance commissioner.

On going chemo June 25th 2010

Wow it is time for an update.
I did start chemo again June 4th, had more June 11th, 25th and July 2nd if my counts are high enough.
Today the June 25th, Labs reveal the my counts have gone down despite all the good things I've eaten. Hemoglobin down to 27.7 from 33.7 and WBC 2.2 from 4.0.
The nurse practitioner said it would happen with this drug no matter what I did.. Gemzar also whacks the clotting factors too.
So anytime I feel bad next week I'll get my labs checked and if I've dropped too low like I did the first time around we'll cancel the last dose of Gemzar ( suppose to get it next Friday) and get some packed RBC's instead. I sure liked the bounce back I got with that transfusion.
Gemzar goes to the areas I had radiated and tends to irritate them. Swallowing is somewhat painful again but I am able to keep my weight at the same level.
My skin all the way around my chest and back feels like I have a VERY painful sunburn.
Wearing a bra hurts so I don't and get relief if I apply acupressure to the painful areas.
Leaning back on a wall actually works so does sitting on the couch.
The neurosurgeon I worked with said that the nerves that got zapped with radiation
were waking up and combined with the chemo drugs that this might come and go for awhile.
So I have another pill to take which does help with this creepy sensation.

Thanks for all the well wishes and prayers

Things are going well.........

Sorry, it's been awhile since I posted anything, a month to be exact.
I have made a major turn around and feel a lot better.

The burn on my chest is healed. That was nasty but there is a cool dressing that promotes
healing by keeping it moist and never letting it scab and no scar formation either.

The pain in my chest is gone when I'm swallowing. It was like having
one of those headaches
you get from rapidly swallowing a real cold drink.
For about 3 weeks I had to spoon in a mixture of Maalox and 2% viscous lidocaine gel
to numb my esophagus before I swallowed anything but Ensure.
I'm about 90% back to eating anything I want. I do have to think about when to swallow
and the size of the portion.....too big and it does scrape the sides as it goes down.
I think I have a small stricture which probably go away with time.

My hair is slowly growing back but I will probably lose it again...........

At my last appointment where several opinions were gathered from around the country
on how to treat me...
University of Washington said done with treatment and scan again in three months....Yale
gurus had no opinion.
There are several chemo drugs that I can take one is GEMZAR. It works on the
squamous cells of which my cancer has some involvement.
Side affects are hair loss, flu like symptoms, and anemia and drop in immune
system. Something to look forward to.

So the tentative plan is to do a couple more rounds of chemo with different drugs
and try to kill off any cancer cells that may be hiding out.

I did much better with the chemo than radiation so I'm willing to give it a shot.

I have returned going to the gym, going for walks around the bog, our weather has been beautiful and my garden is in so I might as well do it.

So, I'll let you know when we start something.

Thanks for all the prayer and well wishes.

Nancy

Update on the update...
Hopefully I will be starting chemo again Monday, June 7th
another dose Monday 14th, have three weeks off
then again July 5th and 12th. Yeah, that's cutting it close to Joels wedding on the 18th but I'm eating better and hopefully
can keep my blood count up and can hang out with
folks when they get here.

Have come to a screeching halt......April 29. 2010

So I started RXT (radiation treatment) April 22 & 23..Thursday and Friday again after being delayed because of the RXT burn on my chest . My RXTs had been redirected and re calibrated in such a way that only the two small areas that showed up on the PET scan would get hit...X-ray folks call it a "boost" and my friend Pat Holloway calls "stun".

Mind you I don't feel the effects while the RTX are being giving but it
does show up some time later. Like Saturday morning. I'll just say it was really bad in the mid chest especially when swallowing anything including saliva because my esophagus is taking a hit .

I had been coasting through all of this with using Tylenol PM for pain and a little extra benadryl to help me sleep at night.. I even scoffed when the oncology nurse practitioner asked about needing pain meds like Oxycodone and I said Tylenol PM work just fine..why would you need anything more?

I really should have called the Radiology Oncologist doctor and got something for the pain but I managed to find some left over diluaded from my shoulder surgery from last year.
Monday by 8:30am my RXT's were cancelled , I left with scripts for Fentanyl patches and Morphine and in two hours later life was much better. Wednesday I had another RXT and followed with a DR. appt . with my Chemo Oncologist for labs etc.

I knew I was tired and had been sleeping a lot, I had been told that chemo and radiation really do take it out of you but one of my labs, the Hg ( normal is 11.0-17.0) came back at 7.0.. This is the one that carries the oxygen around in the blood and in 5 days I had dropped from 10.1 to 7.0.
Those nice people put me in the hospital and gave me 2 units of packed RBCs and the color returned to my cheeks.
My white cell count is 1.0. (normal is 4-11) I will be staying home and washing my hands often.

Tomorrow I have another Dr. appt with the chemo doctor. I have to get my white count up
before I can have my last 4 RXTs and then I'll be done. With the blood transfusions and a little extra hemoglobin floating around in there the RTX burn on my chest should heal faster too.

Blood transfusions make you feel soooo good....... I'd have one for breakfast if I could.

Unfortunately this would happen during build week of the Soldotna Community Playground that Dana has worked on for the past year. I sure wanted to attend and build something.
Much thanks you to my sister Amy who flying up from Georgia to take my place instead and help Dana wherever needed.

And as always a thank you to Pat Ho, who is my chauffeur with angel's wings and get me to my appointments when there have been many times I didn't want to go.
When you say a prayer for me, say one for Pat's own daughter named ......Dayna.
Pat goes a back to the same department in the afternoon...and waits for her daughter to have her RXT....just like she waits for me.... thanks Pat.

Another week of Chemo and Radiation

Thank God Dana was here for the second go around as I am getting tired
and spend a lot of time on the couch trying to nap.
Dana's friends Amanda and Rebecca came over and made more
delicious soups....they are excellent.

April 19th was the last chemo day for me followed by
another radiation treatment and at that time it
was decided to stop radiation treatments for a few days
because I have pretty bad burn on my left chest and shoulder.
The skin has sloughed off and oozes fluid. So now I have a special
dressing to try to protect it and hopefully I can start again and finish next week.

Thanks everyone for your prayers and well wishes...I think I'll take
another nap.

I learned how to shave my head in the shower.

So far this doable and I'm done with week 4.
Radiation continues 5 day a week though I must admit that I have an icky rash on my right chest.
After 13 more treatments it will be something else I just hope it doesn't blister.
They have changed the angles of radiation so now my spine and spinal cord aren't
getting hit any more. It was getting kind of sore. My esophagus is going to bear the brunt
of the whole thing and is still involved even after changing angles of the beams.
I drink almost all of my calories now and I'm getting enough because I haven't lost any weight.
Luckily my mouth is ok it's just after I swallow it hurts. I have some stuff for this and will take it if necessary.
Chemo starts again on Monday for the whole week and the following Monday. Dana is coming to town for the week and that will be nice. Daughters are so nice to have around.

I had a Henna design done on my head today..it turned out great...I think there is a market
for this kind of thing...

Done with three weeks of treatment

This is a radiation treatment. Here I'm getting hit from the back and then that thing below the table rotates to the top and I get shot from the front. I'm in and out of the room in less than 10 minutes.

The chemo has been ok....no nausea or vomiting at all. The steroids make you feel a bit bloated

but that goes away in a few days.

It appears I will loose my hair.....I can easily pull out little clumps of it. I'll keep it until it starts

being a bother then have it cut off...Oh well, I knew it was coming and I have plenty of

beautiful scarves to tie around my bald head.

Radiation treatments go on Monday through Friday at 8:30AM and will finish up at the end of April....just 20 more and I'll be done.

I have gotten some radiation dermatitis/skin rash on my chest and shoulder and hopefully

this ointment will take care of it.

I have moved on to a liquid diet swallowing anything with texture hurts. Dana's wonderful

soups are working great...delicious and feel good going down. I am mixing protein powder

in with them for the extra nutrition.

So I start my mornings off with a smoothie, a 5 Hour Energy Drink and a Xanax...

Seems to work for me..........

I Made through the first week

That first week of chemo and radiation went well to say the least but on Saturday
it was hard getting out of and staying out of bed. I was tired but later in the day I manage to pull myself together
and left the house for a little while. Sunday wasn't much better either. I think the fatigue is from
not getting the steroids on the weekend when I'm not getting any treatments.

Monday 3/22/01 was my last for chemo for about three week then I start again.
Radiation is 5 x week and I am starting to feel it. My chest is a little sore and my throat
feels kind of scratchy when swallowing. There is some kind of lidocaine solution I can swallow to numb my throat if it get to be too much.

I did go to work yesterday and worked 7-12, got tired and went home and was in bed by 1pm
and damn that felt good. I stayed there until this morning but now I'm up getting ready for
another radiation tx.

Actually not a bad day..........3/15/2010

Thank God for daughters, they sure can make life easier in a time of need.

We got to chemo at 9AM and I was hooked up a going by 9:15.
I received about 600cc of fluid to get well hydrated before I got the
2 chemo drugs..aka "the poisons" and another 500cc at the end to help
flush my kidneys as this stuff can be fairly toxic to them. I also received
drugs for nausea...must have worked because I had none.
The whole thing took 4 hours, the chemo sessions for the rest of the week
will last 1.5 hours because only one of the drugs will be given.

Next on to PROV for the 2:30pm thyroid nodule aspiration....no big deal
either. We ended up aspirating 2 nodules and sending it off to the lab
and results should be back in a few days.

Then made a Costco trip and a trip to Jo Ann fabrics, then to
Walmart to buy fabric for Dana's curtains and finally to a
Mexican restaurant for my last margarita for awhile.

At 7PM I'm at the radiology oncology dept. for the first of 35
treatments....pretty painless and they will do their best not
to ding my spinal cord but my esophagus will get hit.
I have a meeting every Wednesday with the DR. to access my
swallowing capabilities and if I'm having problems there is
numbing stuff I can drink until it gets better.

Dana has done a lot of prep work tonight for the
soups that we are making tomorrow so that I
can have a bunch in the freezer.

All in all not a bad day............
And we have finally started........

What a week.............

On Monday the Groshong catheter placemnet went fine and even though it sits in the middle of my chest doesn't bother me at all.
On Tuesday the Bronchoscopy went well.....but no snooze. I had to gargle
awful tasting stuff, a numbing solution to snort into the back of my throat, a numbing mist to inhale for 5 minutes
and 4 Q-Tips with numbing gel sat in my nose for a few minutes before we got started. It helped to have drugs on board too. After the prep it all went well.
The doctor
said he didn't see much and did take a few biopsies, I don't have the report yet.

The aspiration of the thyroid nodule is delayed until Monday 3/15.

Well, I went to the radiology dept. today and
I had this face mask made which I get to wear and is
bolted to the table for each of my treatments, about 35 of them,
thank God they don't last too long.
It's a plastic mesh that is in a frame, heated up, placed over the face and the frame is pushed down to the table
and bolted there until it hardens. The mask is used to keep my head in an exact position
and my chin tilted up and out of the radiation beam as
it circles around and fires at the nodes in my neck.
While this is going on more scans are being done with measurements
and markers all to be calibrated so treatment can start Monday.
I plan to make the mask into a planter when I get done.
I should have taken a Xanax before I went and will now from now on.
That picture looks frightful and IF I was claustrophobic
it would have been bad....but I'm not.... so it's
not as bad as it looks

The blue catheter in the middle of my chest is the Groshong
catheter that was put in on Monday and I'll receive chemo
drugs through it.

Tomorrow, Thursday I have chemo training ...hmmmm
should be interesting.

Schedule for next week.......Mar.7---Mar12...

"Here's my schedule for next week

Monday.... Appt. with Dr.Clark the pulmonologist then go to day surgery and have groshong catheter put in
for chemo treatments.

Tuesday ....Bronchoscopy in Provs OR. They plan to look down in my lungs with a long
scope to see it any tumor can be spotted. None is expected. The thought is that it is so small it
will never be found or that my immune system killed it but not before it had spread to the lymph nodes.

Wednesday.... Needle aspiration thyroid nodule under ultrasound at Prov. Everyone
thinks this is benign but are just covering all the bases and what the hell
I sure have met my $5000 deductible and it'll be covered.

Thursday.... setup for radiation therapy at Regional.....I get one of those head mask made
so that my head won't move while they radiate from mid left neck all the way
down to mid chest. It's a stiff mesh that's shaped to your head and face. While lying on your
back on the x-ray table it is placed over your face and secured to the table so that no
head or neck movement takes place because the machine is
calibrated 3 dimensionally to fire their beams at the exact same spot each time.
I'll be getting 30 -35 treatments.

Friday ..I fly to Kenai to hang out with family. Sunday Dana flys back to Anchorage with me to
help out with the chemo and radiation that I start on Monday through Friday..5 days a week.

The following Monday the fun really starts..........."

Cancer conference today

I went to the cancer conference today at Providence.
Cancer Center.
About 30 assorted doctors attended.....My doctors Gower and Stewart,
the pathologist and radiologist that read my PET, CT and thyroid scans were there too.
I was the first one discussed and boy they sure did. I saw all the tissue slides and heard them discussed by the pathologist and opinions were offered from anyone else who wanted to voice one.
The PET, and CTs were viewed and discussed. Questions were asked if I had had a bronchoscopy
done to look down in my lungs for any tumor.... No , not yet, but it was voted on that I have it done and so next Tuesday it will probably will happen.
But on Monday I will have a Groshong catheter inserted through my upper chest into a big vein and there
I will receive the chemotherapy starting the next week. Google "Groshong Catheter" for details.

Chemotherapy and radiation therapy to the lymph nodes in my chest will start the following week....it's spring break here for a week and then things will start.....

I'm feeling fine.....thank you all for the heart felt love and well wishes.

Got a Game Plan......yahooooo

Well, I had another CT of chest and thyroid today. This one
was much more in depth with more slices done and again
the
primary is elusive and will probably never be
found due to the fact that it is too small or
some times they themselves die.
Anyway the dirty deed was done and it let off cells that
got picked up by the lymph system and there they root and grew.
So the plan is to have a groshong catheter for chemo implanted Monday
and start that and radiation to the lymph nodes in my mediastinum next week.
It will be radiation 5x a week for 6 weeks along with chemo
5x aweek for 2 weeks then off 2 weeks then 2 more weeks.
Yes, I will lose my hair. I will have it cut off as soon as
I have some photos taken with the g'kids.
I think it would be easier to cut it off instead of watching it fall out
and there are some real cool looking scarves out there.
If you have any to spare send them this way.
OK....so now we have a plan......

Well Crap.....

Got the results from the tissue biopsy and it's metastatic non-small cell lung CA with extensive squamous differentiation....
tomorrow I have another scan to find just where it is hiding in my lungs but at least now we can start some kind of game plan....
It did not show up on the chest xray or the PET scan.
The scan tomorrow will be a fine slice CT and should pick it up. In the afternoon I have an appt.
with my oncologist to find out my options...

3/01/10 Update

Well......still waiting for the results from the tissue that was sent to Seattle
last week.

My oncologist called and said the blood test for the
tumor markers and other labs came back normal.

On 3/03/10 Wednesday I have another CT and thyroid sonogram
to be done but first
I'll have drink 450mls of barium sulfate suspension before I go
to bed Tuesday night and was told to drink the second 450mls
when I get to the parking lot at the hospital that way I'll be ready
to go when I get there.

Oh yeah....make sure it's real cold...it's suppose to go down better
because it kinda has a chalky feel and taste.
I think the makers of this gunk are trying to fool us by calling it
"Berry Smoothie" and have a picture of raspberries and blueberries
on the label.

What I wish.....

I wish that a my diagnosis could have been made as fast as
AETNA was in boosting my monthly premiums by $70.00
after the first claim was send in 10 days ago.

Here's the Scoop

Late January, I was putting lotion on my neck and found a lump above the left side of my collarbone. I decided to keep an eye on it and even went on vacation to Hawaii. When we came home I found it had not gone away or gotten any smaller.

On the 17th of February, I ran into my doctor, Dr. Gower, in the doctor's lounge and he felt it and told me to come upstairs after work to aspirate it and make slides for the pathology department to take a look.

On the 18th, he called me to his office to tell me it was cancer and to go and get a chest x-ray, which I did, and was negative. (FYI- my mammograms are up to date and all negative)

On the 19th, I saw an ENT doctor who gave me a head and neck exam and could not find anything abnormal. That afternoon, Dr. Gower removed the node and we sent it to pathology for testing.

On the 23rd they knew it was metastatic carcinoma, although it was poorly differentiate (in other words, they know it is cancer, just not what type), so they sent it to Seattle for further testing. I do not have those results back as of yet.

On the 24th I met my Oncologist, Dr. Stewart, who said she would really like the results from some scans so we could figure out a game plan.

On Thursday the 25th, I had a PET and CT scan that morning and Dr. Gower called me by 4 pm to let me know that the scans picked up an isotope mid-chest, suggesting esophageal involvement, as well as a node on the other side, where I found the original spot.

Today, the 26th at 2 pm, I had an esophagoscopy with biopsy's done. Dr. Gower just called (7 pm) to let me know that the doctor who performed the procedure was not impressed with what he saw and believed it to be benign, however he did take biopsies to send to the lab to be sure.

So, Dr. Gower, Dr. Stewart, and another doctor who I have not met, have gone over all my scans and believe it could be thyroid related. Monday, March 1st, they are going to set up a thyroid sonogram and a fine-cut CT of my head, sinuses, abdomen, and pelvis.

So, the search goes on......


They are looking for the primary source of the cancer. I am feeling fine and have no symptoms, I even just had pizza for dinner right after my procedure. I haven't been very informative because I don't really have any information to give. Hopefully, next week we will know what is going on, make a game plan, and proceed with chemo, radiation, and whatever else is needed.

Thank you everyone for your thoughts and calls!!